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Tuesday, 19 June 2018

The Grey Area: Pregnancy Loss 20-24 Weeks.

Image from Google

The grey area. That's where us parents of babies lost between 20-24 weeks live. We don't fit into any box. Our babies are not legally classed as 'stillborn' but in my eyes you don't have a funeral for a miscarriage. Our babies were born either naturally or via c-section, more often than not on a delivery suite, just like those at full term. Yet there is no legal record of them ever existing. We didn't get a birth or death certificate and we didn't get to register Jonah. I was 17 days away from viability, 17 days away from being able to document that our baby was a part of this world. That's why for me, it's so important to keep saying his name. 

Losing Jonah so close to the 24 week mark is incredibly tough. Being so close to a big milestone, actually felt achievable despite a difficult pregnancy. I know the chances of survival at 24 weeks are slim, but it would have given us some hope. It would have meant Jonah would have been delivered earlier in the evening and I may not have had to endure such trauma from excessive blood loss. 

And then there is the practical side of losing a baby before 24 weeks. I carried Jonah for five and half months. That took it's toll on my physical and mental health.  The anxiety around this pregnancy was beyond anything I'd ever experienced. My bump was getting bigger and bigger and therefore making an impact of my hips and back. I then gave birth via a c-section and had major abdominal surgery. Yet I wasn't entitled to any maternity leave, not one day. 

I spend my time trying to find a group that I belong to. It turns out, I don't really belong to any. Losing a baby between 20-24 weeks is rare, in fact it's less than 2 in 1000 pregnancies. Then I add the hysterectomy factor in - that's even less people. I have yet to find anyone in the UK that has been through a similar experience. My grey area, gets even bigger. 

I can't join in conversations about the relationships between siblings. I can't discuss how many children I'd like to have in the future. I have to walk away when I overhear conversations about pregnancy or newborns at play groups. I so desperately want people to know I've given birth and had a baby this year, but of course, nobody ask about him. But why would they? They don't know he existed. I'm now the mother that avoids conversations at toddler groups and hangs out with the grandparents where it tends to be a little 'safer'. 

I can't enter discussions about rainbow babies or pregnancy after loss either. I don't belong in the group of ladies trying to conceive after the unimaginable. Every bit of hope was taken from us, when my womb was taken. We're stuck in this no man's land, just trying to survive.

Maybe one day the grey will become a little clearer and we will finally belong somewhere. But for now we will continue to try and find the club we belong to.

A little link to some research and advice for pregnancy loss between 20-24 weeks.

Katie xx


Wednesday, 13 June 2018

#StillOurBaby Gabriel.

The third in #StillOurBaby series comes from Anna and discusses termination for medical reasons. This is beautiful Gabriel's story. 


Those seven words that I will never forget “I’m sorry, there’s a problem with baby.” Even now I can still picture that moment, the moment my world changed forever. Then came a flurry of appointments, words like “termination”, “fetocide” and worst of all, “your baby is unlikely to survive the rest of your pregnancy”. This can’t be happening, not to me, not to us… heartbreaking, anguished phone calls…

“It’s done,” she said as she injected potassium into his heart to stop it beating. I lay there, numb. My husband was quiet. Another scan moments later, screens off, confirmed it. He was gone. His tiny heart was no longer ticking inside me. His movements stopped.

We were numb. My baby was in there still, where he should be… but he had died. He was dead.

“Baby mummy?” My son asked.

“No angel,” I managed, “baby gone…”

Two days later, he was born. His entrance was rapid and unbearable. I was panic stricken. We were in the bereavement suite, watching Netflix.

“I’m pushing I think,” I said panicked and woozy from the gas and air, “I don’t know… I’m frightened.”

“Don’t be frightened,” my midwife soothed as the agony took over.

Two pushes and I knew he was there.

“The pain has gone,” I told her.

“It comes in waves,” she said gently, “you know that.”

“I’m wet.”

“I’ll have a look under the sheet, if I see baby is coming I will press this button for some help…” she lifted the sheet, “baby is here,” she said gently, pressing the button. The shaking began. I felt sick. They took him away, wrapped in a towel.

It was bizarre. Even though I knew he was dead, I felt the usual rush of post birth emotion, I wanted to meet him, I was almost excited, happy… I went to the loo to clean up. I stripped my wet bed.

We wanted to see him. I hadn’t known up til then if I wanted to or not, but I did. We sat together on the sofa bed and they brought him in. I asked not to see his defects. He was dressed in a tiny pale green cardigan, a hat, and tucked under a gorgeous blanket with little lady birds on it.

“Hello Gabriel,” I said softly, not knowing what to do. He lay in a tiny Moses basket. So peaceful. She showed us his feet which she thought were gorgeous. We stroked his little face. Delicate, soft, cold. I was so pleased to see him. My tiny boy, perfectly imperfect.

“Can you take him?” I asked her, “I don’t want to see him when his colour has gone…” I’m a nurse, I know what happens. She nodded, and he was gone.

My husband slept. I lay awake listening to the screams of some woman elsewhere on the delivery suite, wishing I could swap with her, wishing she knew what was going on in our room. Our midwife apologised.

The screaming stopped. Her baby was here. Her baby would be wriggling, nuzzling in to her, clutching her fingers. My baby was cold. My baby was dead. My much wanted, longed for second son. Loved from the moment those two lines appeared.

We left early in the morning. I had to do it quickly, like ripping off a plaster. The thought of leaving my beautiful boy with strangers threatened to tear my heart in two.

We had a memory box from the hospital, photos, candles… footprints. But no baby. No car seat to wrestle in to the car. No balloons from excited visitors.

We went home as if nothing had happened, I had the usual after effects, bleeding, pain… but no baby to show for it. My head went in to meltdown, tormented with grief, guilt, isolation.  My best friend arranged Gabriel’s cremation, made sure he had the bunny we had bought him with him at all times. I had one to match. I squeezed it tight, when I needed it, hoping he could feel my cuddle too. The funeral directors were kind, they looked after him when I couldn’t. They kept him safe.

And then I realised. He was gone. I was empty.

Image of Gabriel's Bunny

There is only one way to end the stigma of termination for medical reasons. Talk about it. Raise awareness. It happens so much more than you realise. I felt so alone… and then I spoke to someone else going through the same thing and the relief was enormous. We held hands through our grief. Even on the darkest days, I know she understands.

My darling boy. My angel. I hope your bunny is giving you cuddles the way I should be. I hope someone is caring for you, wherever you are. I hope that. I don’t believe it, but I hope that.

You sit in an urn by my bed. It feels better to have you home with me. I stroke our matching bunny.

The milestones are coming… I dread them. I think of you every day, my beautiful boy. I am now used to being in pain. It overwhelms me.

But you were born. You are our son. And I miss you, sweet boy.


Thank you Anna for sharing your heart wrenching story and for helping break the silence around TMFR and baby loss. 

Katie xx

Monday, 4 June 2018

Charity Focus: Sands #FindingTheWords.

It's Sands Awareness Month, so it seemed only right to have them as my charity focus for June. For anyone that doesn't know, Sands stands for Stillbirth and Neonatal Death Charity, however they also support those that have been through late miscarriage. 

The charity was founded in 1978 by two bereaved mothers, when they discovered their was no help for parents that had lost a baby. It started as a small charity, and is now one of the most well-known baby loss support charities in the UK. In fact, it was probably one of the only support networks I was aware of, prior to losing Jonah. 

So what do Sands do? They have a range of support for anyone thats been affected by the loss of a baby. When we were discharged from hospital, we were sent home with a Sands information pack, which included booklets for grandparents, siblings and even employers. I guess they were one of the first pointed of contact after Jonah died. 

As well as literature, Sands provide a helpline via the phone and email and most crucially, support groups and forums. I actually sent a Facebook message to my local group, from my hospital bed and now attend monthly sessions. The groups provide me with the much needed reminder that, we're not alone and it's so lovely to meet parents that live near by. We spend time reflecting on the month that has passed, if anyone has any news and have time to walkabout our babies or our maternity experience. The groups aren't just for parents ether, I know our group has welcomed grandparents in the past and I know of siblings that have attended meetings elsewhere too. 

This weekend we visited the Sands Garden at the National Memorial Arboretum, for a special memorial day. The event was just what we needed and was another example of the care and support we have received from this charity. They held a special service then a blessing in the Sands garden at the Arboretum. It was also an opportunity to meet some of the lovely ladies I've chatted to on social media and learn more about their babies. 

 We we're encouraged to leave stones for our babies, these are Jonah's that were left in the garden. And each given a rose to lay. 

I wanted to do these charity focus posts to celebrate and promote charities that have really helped us. This month Sands have launched their #FindingTheWords campaign, which involves a short video that can be shared n social media. It's all about keeping the conversation going around baby loss and supporting those that have lost babies. You can get involved easily, by just sharing the video on Twitter or Facebook using this;

"Baby death is still a taboo subject. But together we can break the wall of silence. Join me in #FindingTheWords to support anyone who has experienced #babyloss and share the new @SandsUK film at #15babiesaday"

Sands really have been a lifeline for us and we cannot thank them enough, for their continued support over the past few months. 

You can find out more about Sands here.    

Katie xx

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